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Friday, December 12, 2014

Blood Draws

Our daughter Teale is very tolerant of blood draws to check her medication levels. This has not always been true though. There was a time it took the brute strength of a few or many, to get a blood draw done. We tell Teale the story of the time she chucked her "no spill bubble container" at the phlebotomist. Her aim was perfect, she hit him square in the middle of his forehead. Luckily he didn't need stitches, but it did cause a good gash. He had been the one phlebotomist we had found who was willing to work with Teale. He was patient, caring and wanted to help her to not be so scared. He showed her so much caring, that we only went to him for years, until the day he told us he was moving to Florida. By then he had helped Teale to not be scared of a blood draw and we knew we would be ok, even without him. He forgave Teale immediately after she threw the bubble container at him and even followed threw on getting her blood draw done that day. Mike was a special guy in the life of my family. I often wonder where he is today and whether he knows how much he helped us? I wonder if he has a scar from the gash Teale caused and if he thinks of her? How proud he would be if he saw her today. She sits through endless waiting on Saturday mornings to get a blood draw done, never even flinching. She needs them fairly often, depending upon how she is doing. If we are having difficult behavior issues from her, we often first check medication levels. Medication levels can give us information that Teale often can not provide. Her seizure and bi-polar medications have very small windows of therapeutic benefit. If they get slightly high or slightly low, they can cause her great distress. Teale is also on thyroid replacement medications, as she has Hoshimoto's Disease. Keeping her thyroid balanced is often very tricky. A lot of people have thyroid issues, many would probably say it's not a big deal, you just take a replacement. Personally, even I would say that about my Graves Disease. I've been on the same dose of thyroid replacement for many years. My body seems to have adjusted fine, but I'm not Teale. Organic brain injury, her other medications, everything messes with how she reacts to medications and to how they are metabolized in her. A "typical" person would not necessarily need the huge amount of Lithium she takes. The balancing act of her medications from several different specialists is very tricky. Interactions have been missed, problems have occurred. Just last week we discovered some of her medications are off kilter and we are tweaking. Hopefully this is the cause of her unrest. We are hopeful we can get them straightened out, but it is trial and error and blood draws to check and then more trial and error... 

Wednesday, December 10, 2014

Forgiveness is giving up the Hope...

As I reflect on the last 16 years of my life, this quote has been on my mind often. I came across it recently and it totally struck a nerve. The should have, would have, could have's of Teale's birth haunt both my husband and I often. Around the anniversary of her birth, I relive the memory almost constantly in my mind. I remember some things very clearly and others I think I was just told happened. It is fuzzy, what is real and what I may have imagined. I know medical malpractice was at the core of her injuries, but my belief in God and fate makes me also wonder if it could have been any different. Were Mark and I just meant to be the parents of this very special child? Are there lessons to be learned that could only be taught by living this life? I made a decision almost immediately after her birth that all I wanted was to work on gaining peace in it all. I said to Mark, I can not go through this over and over again and if we decide to sue, it will not change what has happened. We will not get back the child who was there before the brain injury occurred. I didn't want to be a victim. I knew medical malpractice is very difficult to prove and I would be ripped apart in order to try and prove it was my fault. Questions like, had I ate tuna or not taken the prenatal vitamins or I had had a glass of wine before I knew I was pregnant? The lawyers would be brutal to me and hearing the birth story through their eyes would be very painful. I was worn and just wanted to get to know my new infant. I wanted peace, for myself and for my family. We may have had a case, we may have gotten Teale compensation for the life she now lives as opposed to the one she "should" have lived....but forgiveness is giving up the hope that the past could have been any different...

Thursday, December 4, 2014

Hours after her terrifying birth with APGAR scores of 0, 0, 3, 5... The NICU nurses (2 of our team of 3, I am friends with on FB) took this pic for me before Teale was sent into surgery to put her intestine & colon back into her body. In this pic, Teale is in a medically induced coma, to help her body heal. She was kept in this state a few days. The surgeon, who put her intestine & colon back in & closed her up, was Dr Bob Emmen's. His daughter Kim, was a good friend in HS and beyond. Dr Scibetta was our on call, delivery room dr & his daughter, Karen, was a friend in HS & still is a friend of ours. Karen took wedding pics for us in both 1989 & at our ROV.
Next Tuesday, 12/9, this very sick infant, with a very uncertain future, turns 16 years old. I know she has no idea how much she is loved and how many people her life has touched. I'm sure it is far more than Mark & I will ever know. Thank you for all the support & love & prayers on this journey. We seriously could not & can not do it alone. It takes a village, Mark & I are Blessed!

Tuesday, December 2, 2014


On 12/9/14 Teale turns sixteen years old. Turning sixteen conjures up memories for most I'm sure. You might remember a Sweet 16 party and or getting your learners permit or even your drivers license. It is a big milestone year for most. Independence is gained and you no longer have to count on your parents for all your transportation needs. It is the year parents worry and kids blossom into young adults. Many seek their first "real" jobs outside the babysitting and lawn cutting money makers of youth. I believe it is a year kids and parents butt heads often, curfews get broken, limits get tested. It's a year of proving you are to be trusted or possibly a year of much argument. Parents try to let go and kids try to fly. Sixteen is a big year for most kids and for most parents. For me, Teale turning 16 just makes me feel alone, in a sadness I have felt on other milestone years. It is a year I feel different from many other Mothers. I am the Mother of a daughter who is chronologically 16, but mentally much younger. Oh, I know there are others out there who understand this pain. I've watched several friends feel similar loss when their "special" child turned 16. So I do realize I am not really alone in this feeling. But all people are unique and therefore so are our feelings. Even the one person who could have the most similar feelings, my partner in this crazy life, Mark, has his own unique thoughts as sixteen approaches for his middle daughter. I won't even try to voice the differences between us, because honestly, I've avoided the discussion. My fear of a floodgate of emotions pouring out of me has kept me from any deep conversation. I know he is hurting too, but I can really only speak for myself when I share the loss I feel. It is like life is passing Teale by in some ways. I often think about all those kids who she was raised with in the public elementary school. They are in tenth grade this year, probably most of them have some idea of what they want out of life. They may be thinking about colleges and lifelong careers. Many have had dating experiences and crushes. Some are already driving and working. Their lives might be filled with sports, instruments, clubs and or social connections. Teale misses out on many of those typical experiences and no matter how much Mark and I try to fill up her life, it will never be typical. Most likely Mark and I will always be her biggest supporters and her best friends. I occasionally allow myself to wallow in my sadness. Today that sadness has overtaken much of my thoughts. The tears started to flow at one point and I realized I was missing my Mom in all this. Somehow I knew she would understand my sadness as Teale turns sixteen. She wasn't a perfect Mom by any means, but she really shined as an understanding, unconditionally loving Grandmother with Teale. I remember her heartbreak when Mark and I decided we had to hospitalize Teale as a young child, for what turned out to be a manic episode of a new diagnosis at the time, bi-polar. That day was one of the lowest ever and my Mom came to my home to offer support. It was in that moment that I finally felt true forgiveness toward her. There was "stuff" I had held onto, anger I had not let go of. But that day, in our messy garage, as Mark left to go pick up Teale from her elementary school and I broke down sobbing, I started to understand my Mom better. My rock, Mark wasn't there to support my sadness, he had the awful task of admitting our young daughter into a pediatric mental hospital. I was a disaster and in my horrible pain. I saw my kid's Grandmother, my Mother, who was hurting deeply too. I remember her wishing out loud that she could make it all better, but it wasn't the words I heard, it was the sincerity I felt. It hit me hard, my Mom was the one other person besides Mark and I, who truly understood the anguish that we felt. It was a pivotal moment for me, a moment I will never forget. I finally let all that "pent up stuff" against my Mom go. I finally saw her as a person, a person who wasn't perfect and I realized I had tried to hold my expectations of her too high. Mom left us almost eight years ago and the thing I still miss the most is her not knowing my kids as they grow. What I regret is that it took me so long to just love her as is...faults and all. I wish you were here Mom to wish Teale a Happy 16th Birthday, I know you would be proud...

Thanksgiving Weekend

For those who are not on FaceBook with me, this was a recent status that explains a bit of what the Thanksgiving weekend was like. We were still "just" thinking it was her mental illness causing the unrest, but now we are questioning seizure activity. Hopefully we will have an answer to our concerns soon... 

On Thursday there was not a laugh or even a slight smile from her all day. Teale literally just growled, yelled & was horribly mean to us the entire day. Her soul seemed completely unsettled and very angry. Yesterday was still quite unpredictable & unsettled at times, but she smiled & laughed some, which made the day 100% better. I truly needed to see that joy, even just a little, to renew my faith. Cycles are common with Teale. She goes through weeks of tough, hopefully followed by weeks of happy & calm. The last few weeks have been unpredictable, rages have been more often again, intensity of moods has been high, but Thursday was by far the worst day in a very long time. It broke both Mark & my heart, not for ourselves but for Beau & Gwenn, who will forever remember Thanksgiving 2014 as a very sad day. Our family has no choice but to plug through those days when Teale's moods control us all. Having those days happen on holidays is more common than not. I have often wished for crisis help on days her mental illness is uncontrollable. A place she could go, so we could take a break & renew our souls to continue caring for her. I have wished for magic pills & therapy that cures. On Thursday I wondered much about medical marijuana & if it would have helped Teale to feel more at ease in her very obviously tortured self. I'm often frustrated by not being able to help my daughter enough. There is no greater pain for a parent than to watch your child suffer & to have no ability to help them. How I hope that someday mental illness is not treated as a "closet problem." I pray those who suffer like my Teale someday have the same support and love that a person with another disease gets. The shame associated with mental illness is unproductive & useless to the many people who suffer in silence. It is not Teale's fault she has this challenge. I am not ashamed to discuss it openly b/c I am proud of how much she has taught & improved over the years. Our experience has been able to help countless others who reach out to us for support & advice. Sharing the journey encourages others to seek help, knowing not everyday has to be like "Thanksgiving." There is joy, but some days it is just buried very deep... Keep the faith & support the mentally ill. Their pain is not "just in their heads."

Not Knowing...

I'm up early, the only time I really seem to enjoy writing. A cup of coffee in hand, my mind fresh and clear from sleep the night before. The house is quiet, just the sound of my husband, he's sleeping hard and I can hear his breathing, heavy and loud, along with the hum of lights and the refrigerator. I woke and thought about going back to sleep, but I've craved writing for weeks and just haven't taken the time to do it. Another holiday passed, another Birthday coming, Teale will be sixteen next Tuesday. She has been tough and we've been struggling with "what" this is for weeks. Recently we've been seeing staring spells, where she won't come back to us easily and we are now questioning if this is new seizures. The weekend was especially difficult with her moods controlling us all. Five days off from school is a recipe for disaster in itself with Teale, but something is different. Mark and I are trained well by Teale and her doctors to be constantly observing her. We watch for changes in her moods and in her physical abilities, knowing we are her only advocates and if something changes, she needs us to help her. Even our son, who is in college, but living home, has seen the staring spells that seem to accompany the recent behavior outbursts. Seizures have been part of Teale's entire life, they started in the NICU and have haunted us on and off since. Is she experiencing a new seizure that is interrupting her brain activity and for lack of a better term, then scrambling her thoughts and making her feel confused and off? This could easily be the cause of behavior outbursts. We don't know, we just know she has not been well for weeks now. Outbursts have been more frequent again, sleep has been quite often interrupted. We've heard her up at odd hours, wandering, getting drinks and looking at her American Girl catalogues or watching her iPad. Teale's bi-polar disease can do this to her too and obviously, lack of good sleep can cause a person to be fatigued and crabby. But then again, lack of good sleep can also be the cause of seizures, it is how doctors "see" seizures in a controlled setting. We've done several seizure studies with Teale, fifteen feet of cord attached to her head and an EEG reading her brain waves. It is a necessary test for Teale to see the invisible to the naked eye issues going on inside her complicated brain. Her neurologist can't tell us much without this test, but it is not a test done quickly or easily. She's been hospitalized a few times for long term EEG monitoring, two plus weeks, attached to fifteen feet of cord in a hospital room. To say it is not fun is an understatement. One of us must be with her 24 hours a day and keeping her happy with no activity is tough. In long term monitoring, the doctors lower seizure medications and limit sleep. Denying the body REM sleep brings out seizures in a person who is Epileptic. To be able to "see" seizures on the EEG gives doctors more information as to what they are dealing with in order to treat it. In light of our observations recently I was in touch with neurology yesterday and will be seeing them today. Mark and I never know what's around the corner for Teale, will her seizures continue to be controlled or will they creep out again in new and different ways? Is this seizures or  is it something else, the mysteries of Teale are often hard to figure out. The only thing we can do is to be vigilant, observing her and making sure any signs of something going on is explored by her medical team. So I again ask for prayers; prayers that we figure out Teale's distress, prayers there is an answer to her mental pain and prayers that if there is no logical answer, this cycle passes and our happier Teale returns... 

Monday, November 10, 2014

My Miracle, part 2

The love and experiences were easy for us. We both believed in our hearts we could "heal" Teale with our love. I probably believed it more so, in almost a "nonacceptance" way. I was sure her cerebral palsy was curable. I was sure we could make miracles happen and her right hand and arm would be fine. After all, Mark and I were united in helping our daughter. We started in the hospital, learning about "Kangaroo Care." We agreed to start Teale on PT right there in the NICU. I went through many hours of pumping breast milk, even though Teale was not even allowed to eat it. Because we both believed in the healing power of breastfeeding her, once her food restrictions were lifted. We prayed and asked for prayers a lot, receiving notices of churches all over the world praying for our daughter. Those things were easy for us. Then there were the things we didn't say, the unconscious decisions that I will always believe made Teale a better person. We had music playing for her from the very begining. A tape recorder in her NICU crib, soothing her when we were not able to be there. Music would be a hugely important part of her life and in my heart I am sure it has healed much and made connections in her brain that may never would have happened in another family. Even after the day I was told "she has failed all her hearing tests, we believe she is deaf." We still played music, believing "they" were wrong. There were many things thrown at us and many we only mildly accepted, pushing the "bad" away and believing in the power of God, love and prayer. Honestly, we were totally full of ourselves, both Mark and I were so positive we could "show the doctors they were wrong," there was hardly a thought of "maybe some of this can not cured?" We even omitted the truth when speaking to people about Teale, never acknowledging her severe brain damage. Teale was going to show the world what determination, prayer, hope, faith and most of all LOVE could accomplish. It's funny how I can get back inside that "me," the new Mom of a daughter with extremely complicated medical and physical needs. I still remember how clearly I truly believed that someday, somehow, her right arm and hand would work. Her mind would be strong and there would not be developmental disabilities. Maybe some see this as sad, that I was so unaccepting of my daughter as she was, but I don't see it that way. What Mark and I did, both conscientiously and unconsciously was to believe in our ability to make her the best she could be. We believed she would walk, we believed she would talk, we believed she would learn and love and be loved. We believed our work and the work of a team of supportive therapists, teachers and doctors could create a much better person than the doctors at the NICU had told us she would be. We had faith and we were constantly lifted by the prayer and support of those who came into our life. Teale is who she is today because so many believed in her. There have been many obstacles, many times we got thrown a new diagnosis that took away a bit of our heart. There has been acceptance too, that I did not "cure" everything still haunts me in some ways. The truth is Teale wasn't meant to be "healed." Teale is a miracle, not because she lived through a traumatic birth, but because she has taught me what "life" really is. It's not the money we make or the jobs we hold or the house we live in. It is the connections we share as human beings, loving and supporting each other through the good, the bad and the very ugly. Everyday I am touched by people Teale brought into my life. I realize, without her, my friendships and my love with Mark would not be as strong. That is the miracle of Teale. 

Wednesday, November 5, 2014

Me, Mark & God

I woke with much concern on my mind. Worry overwhelming my thoughts and a question of how to get through ringing over and over again. Mark is hurting and I don't know how to help. It is stuff we often deal with, but somehow it is knocking him harder this time. I feel helpless, yet I believe in keeping the faith, I believe things will get better. This is marriage, one of us down and the other one carrying the ball. We have made it through twenty five turbulent and joyous years this way. I remember times the darkness took hold of me and I just couldn't see the light, Mark was there. He would support me in my pain, comfort me and encourage me to find the good again. We will make it through, we have made it through many, many dark times. Our life together is full of love and people who care about us. I know this too will pass, Mark has taught me that, above all others, he has taught me faith. He has also taught me that somehow good always comes from bad. I believe in us and our life together being a covenant with God. I believe He is a third party in our marriage & He is really the one who puts the light back into our souls when the darkness creeps in. When I feel helpless, I try to let go of my worries and give them to God. I know holding onto worry just drains me of my positive and the good feelings that create more blessings. So as I talk myself into making today better, please say a prayer or two for my husband, Mark. I know he will feel the love and his soul will be lifted by your love. 

Sunday, October 26, 2014

The Ups & Downs

We all have ups and downs in life. Times we are on top of the world and times we struggle to understand the point. I'm often somewhere closer to the struggling to understand the point, but I try to put out a more positive outlook. Often my strategy is to look for the bright side in a tough situation. An example, yesterday I posted the following on my FaceBook page.

My sincere thanks to the many people, including Wegmans (our local grocery store) security, who offered Mark help in Wegs parking lot a bit ago. Teale in a rage, by yourself, in public, is beyond tough. But, the upside, the world really is getting more compassionate toward these situations. People are recognizing "a child with special needs," as opposed to thinking it's the parent's fault. Mark didn't feel like anyone was judging him, only wishing they could help. The kind offers made Mark feel less alone. A huge difference from how we were treated when Teale was little & raged in public!   

The truth is I do feel grateful for the help offered and the fact we don't go through these episodes as often, but the "why does my daughter suffer so much haunts me." It's not pretty and it wrecks me every single time it happens. It can ruin a day or a weekend. I can recover quickly or I can hurt inside for many hours or even days after a rage. The bruises on the outside pale, both literally over time and they are not nearly as hurtful as the pain inside my head. I suffer PTSD from rages. My adrenaline gets high in the fight or flight moment of a rage and then I crash. I am sincerely mentally burnt out and scared of what will happen next. But I have found looking for the good in these situations helps me. Like the fact that if Teale throws stuff or breaks something in a rage now, she will help clean it up, after she calms. She knows my exceptions and has come out of rages asking how she can help. This may not seem like a huge gain to an average person, but it is in my life. We all have ups and downs, we all deal with stress and disappointment in life differently. I tend to write and share my life with others, whether it is here or on my FaceBook page, sharing through stories helps me to get through. So if you are a part of my life here, on FaceBook or both, writing is cathartic for me and I appreciate your being a part of the life of my family. 

Thursday, October 16, 2014

My Miracle

She was born to me on a cold December day in 1998. A surprise, coming earlier than we expected, but our knowing this was always a possibility. We knew she had a serious medical condition, that could cause premature birth, but we did not know the gravity of what was about to happen. We didn't know that what we expected to be her biggest issue, would soon turn into one of the least important concerns. My husband held my hand tightly as she was pulled from me via cesarean section. There was silence in the room, not a cry from my baby, not an announcement of "It's a girl," no excitement or even hushed whispers. It was the most devastating silence I have ever experienced. I broke the silence, asking my husband "Is it alive?" His response even more troubling, "I'm not sure." I then conjured up the courage to ask "Can someone tell me what I had, so I can know who I am praying for?" "A girl," the kind, soft spoken doctor said, "do you have a name?" "Teale Tatiana." I announced proudly and began praying for her in my head. That is how Teale’s life began. She was unresponsive when she was taken from my body. It was a shock that no one in the room expected, a baby who wasn't breathing. There was specialized nursing in the delivery room, but that was because the hospital staff "just" expected her to have a condition called gastroschisis. Her stomach had not closed in utero and she would need surgery to put her intestine and colon back into her tiny body. I knew it was touch and go in that room because the silence was so unnerving, but later we would learn there had been no pulse for over seven minutes. No pulse, nothing, she was gone by all medical definitions and her APGAR scores were proof, 0 at birth, 0 at five minutes, but they didn't give up, so at ten minutes she got a 3. The nurses worked on her and then told me they needed to get her to the NICU. Teale would still need to undergo the surgery to correct her gastroschisis as soon as possible, but first they needed her to be stabilized. They whisked her off, with me barely able to catch a glance of my beautiful baby. Mark, my husband of almost 10 years, was by my side, as I recall, both of us silent. What could we say to each other in these moments of uncertainty. We had no control over the situation and I'm sure all we felt was desperation and grief. Our baby was in great distress and we had no idea how this was all going to play out. This was just the beginning of a life we never saw coming. Teale would remain in the NICU for two months. In that time, she would be diagnosed with severe brain damage, cerebral palsy, seizures, we would be told she was deaf and may never walk or talk. But, one doctor's advice stood out above all the negatives that were thrown at us ~"Give her all the love and experiences possible." and that is how our miracle began. 

Sunday, August 31, 2014


There is a trend going around Facebook right now, no not the ASL ice bucket challenge, although I'm all for that one! I'm talking about The Three Positives challenge. I already participated and tried goading some friends and my dear hubby to participate too. Only one friend took the bait and it took her being asked by a second person after me before she did. Anyway, I'm a firm believer in looking at the bright side of things. Even in a bad situation, I can often find the lesson learned or the positive about something. Years ago a book called The Secret was recommended to me. I remember some of my friends who are also special needs Mom's being completely "pissed off" about this recommendation. After all, part of the premiss of the book would imply that I brought Teale into my life, actually, that I caused her. Anyone who is a Mom of a special needs child already carries much guilt and questioning on their part in how much they caused their child's suffering. My friends did not want me to read the book. They felt is was a cruel recommendation and I should ignore the ignorant person who threw this suggestion at me. I didn't ignore, I read the book and for some time I tried practicing it's suggestions. I remember seeing positive changes in Mark and my life during that time, but the habits did not stick and I lost my way, at least a little. I think I'm more grateful as I age, I see the good things I have and I appreciate all the good people I'm surrounded by. I found it funny that neither my husband or my friends took on the challenge though. We all need to focus on the positives in our lives. When I'm in a negative place, I find the negative snowballs and I have more bad than good going on around me. But when I ask for prayers and positive energy to be sent my way, I feel lifted up. It may be coincidence, but it may be just the way the Universe works? I'm back to trying to think possatively. I know I will slip and fall. I know I will complain. I know I will make mistakes.
I'm going to focus on the good in my life, because the reality is, I have much to be grateful for. 

Tuesday, August 26, 2014

Staying Steady

Staying steady, that is my goal right now. To not gain weight during a Teale vacation from school has basically been impossible for me in the past. I eat stress. I am truly one of those people who understands the saying that stressed backwards equals desserts. I'm a huge sugar addict and when I'm stressed I reach for sugary treats. I think it got worse after I was diagnosed Celiac Sprue at the age of 39. I felt sorry for myself. I was being denied so many foods that I had eaten all my life, so the foods I could eat, I ate! This meant gluten free ice cream and safe candy and cookies or other bakery goods that I could make or buy gluten free. I was out of hand, mostly because I was mad. Being diagnosed Celiac came at a very difficult time in my life, I had lost my Mom. My Mom wasn't the Mom of the June Cleaver variety, she was more like the Roseanne Barr type. I had not appreciated her much of my life, but I don't think that is unusual, most kids don't appreciate their parents. It took my having my son and then my daughters, to finally appreciate her as a person. I had put her on a pedestal most of my life, not that I thought she was perfect, but I thought Mom's should be perfect and mine was flawed. I thought everyone else had perfect Mom's and I just got the short end of the stick. What I finally realized as a Mom myself was that she was a person, who had lived her own trials and tribulations. She had grown up in challenges that molded her and shaped how she dealt with things, she, like me, was affected by her past. My past wasn't always pretty, but I couldn't let it define me and I needed to move forward. One of the things that we all struggle with is letting go of past hurts, we hang on them, we let them eat away at our soul and we relive that pain over and over again. I'm not sure when it happened or how, but one day I finally saw my Mom as a person with imperfections instead of a Mom who had let me down. I started enjoying her good qualities and letting go of the ones I didn't like. She became my biggest fan as I let go of my resentment and anger for the past. Teale has been responsible for much good in my life, she has taught me much about forgiveness and she has helped others see me differently. My one sister in law has openly said to me that Teale is the reason she likes me. Before Teale she just couldn't or wouldn't let me in. As Teale's Mom she saw me so completely differently that she finally got to know me and discovered I wasn't the person she had perceived me as. I think that is the key to relationships, we perceive what we want, instead of the reality. I had judged my Mom all my life, forgetting she was human too and flawed by the life she had lived. So losing her so young, after I had finally started liking her, hurt, a lot. The same week I was losing my Mom to a stroke she had suffered, I got very sick. I lost about ten pounds in a week, because, and this may be TMI, everything went straight through me. I was spending more time in the bathroom than I was spending out of it. The cramping pain was debilitating and I knew what it was. I had tested positively on blood tests for Celiac Sprue years earlier, but at that time, my endoscopy showed no signs of damage to my villi. I was told that stress could bring out the Celiac and I was pretty sure that the stress of my Mom dying had done just that. My Mom died exactly a week after my brother had found her down on her floor from a severe stroke. She was only seventy four years old and I was not yet even forty. Losing her when my kids were still so young made me mad. Her poor health was her fault because she smoked like a chimney and drank way too much alcohol, so I blamed her and had to figure out how to move past that anger. Life with Teale had been extremely challenging in those days, her explosive behavior was constant and we had not gotten the medications correct yet. It would be years before we would finally put Teale on the antipsychotic that would help stabilize her moods better. So at that time, when my Mom died, I felt like I had lost one of the few people who got my pain, who understood how sad and how worn both Mark and I were. Losing her hurt for all the obvious reasons that losing a Mom hurts, but for me, it was different, because in some ways Mark and I just felt so very alone in our life with Teale and my Mom often expressed to us how proud she was of our efforts to help Teale be the best she could be. Within weeks, I was diagnosed Celiac and the one person I wanted to call and complain to, was gone. I remember those early days of my Mom being gone and my diagnoses. I would wake up and for a split second I would be peaceful but than I'd think about what was new in my life. It would hit me like a black cloud on a sunny day, "My Mom is dead and I'm Celiac." That was 2006 and this is 2014, over those many years I have struggled with my Mom's death and my diagnosis. I have fought with doctors that they are wrong about me and I have been retested several times. Every time still comes back possative. I think my doubt is because Celiac is a genetic disease and so far no one else in my family has ever been diagnosed except me. Mark remembers how sick I was and laughs at me for my doubt. Over the years I have forgotten, much like a woman forgets how intense childbirth is. I had not really learned to live Celiac in a healthy way. I eat gluten free, but as I said before, I over indulge in gluten free treats. This vacation from school for Teale has been filled with stress as all vacations are. She misses her routine and the socialization that school supplies her. The difference for me is that I am trying to stay very conscious of how the stress effects my eating. Believe me, I have not been great at this, I have over indulged in some treats, but I think the difference is that I am so much more aware of what and why I am doing it. This morning when I stepped on the scale, I was the same, not more, not less, and this week I am going to celebrate that. 

Saturday, August 23, 2014

Words Do Hurt

I talked her into walking over to the elementary school play ground because I was taking care of my friend's son, Colby and he really wanted to go. It was my second attempt at asking her and to my surprise, this time she said yes. So she and I walked and Colby rode his bike that he had brought. Caring for the two of them all day is tricky, Teale and Colby both have their own issues. Sometimes their needs clash and it can be not so pretty! But I get Colby and I'm one of the few his Mom can trust to care for him and sadly I get that too. I can't leave Teale in just anyone's care, we need people we trust, who have understanding, humor and a whole lot of patience! So having Colby adds to the stress of the week off with Teale, but he also brings a different joy. He accepts Teale, he gets her and for him, she is just Teale. When I told him I couldn't leave Teale home to take him to the playground, Colby said happily ~ "She can come!" So as we walked and Colby rode, I was aware of how we must look. Teale's gait is off because of her cerebral palsy, she talks loud and her speech is not that of a fifteen year old girl. Plus there is that, she is fifteen, walking with her Mom to the playground. The image is kinda funny, as she and I look much alike, but she is bigger and taller than me. Sometimes it feels like she is my shadow and I realize this will be my life, possibly forever. I picture myself an old lady and Teale forty something, still following me, her an image of my younger self. The walk was filled with me shouting to Colby to wait for us or not to go too far ahead. Sometimes, although Teale doesn't always follow rules well, (like be nice to your sister :) another person not following rules agitates her. So I was thankful Colby was listening so well to my instructions. Overall, it was going smoothly but as we walked I thought about what was ahead? Would there be other kids at the playground? Would Teale and Colby get along with them? As we approached the playground, I realized no one was there and I felt both relieved and disappointed. Teale and Colby have special needs and neither have much opportunity, besides at school, to interact with other kids, so a public place like this often is the best opportunity. I knew Colby would want to run around and play, Teale may just sit and watch him, she's aware of her size and seems to kinda get she's too big for a playground. So Colby ran off and as I went to sit on a bench with Teale, she handed me her water and walked toward the swings. She used to swing for hours in a day when she was little, but these days she never swings at home anymore. I've seen her on the swings at her school, but there she is comfortable and her friends are swinging too. Somehow this move by Teale surprised me and to tell the truth saddened me too. In elementary school, Teale swung, a lot both at home and at school. We had a special needs swing with a back when she was small that my husband pushed her on for countless hours. He would sing to her and sometimes she would sing along. The amount of time he devoted to Teale was astonishing. I would have Beau and Gwenn while he stood outside in all sorts of weather pushing Teale and singing. The back and forth rhythm calmed her, it brought her peace and therefore it brought our family peace. She didn't want me, so giving him a break was impossible. The swing brings back memories of isolation too. Teale was alone, she really had no friends to hang with as a child, so the swing was her favorite place. As she grew we got a swing installed inside and there she would sit, watching music videos for hours on end, swinging back and forth. The sound of the creaking swing actually calmed me. I knew where she was when I heard it and I knew she was safe. Those were the days when she often went after our youngest daughter, Gwenn, so hearing the swing stop moving meant I better check on her, or Gwenn might get clobbered. In the Summer Teale's desire was to be outside again, so we bought an upright hammock swing that she could push herself on. We also got her a CD player with headphones so she could swing and listen to her music. Many years of swings go through my head as I watch her, she is alone swinging and watching Colby play. My heart breaks a little at the memories. I have this intense visual in my head of her fifth grade picnic while she was still in an integrated setting with typical peers. The kids were all enjoying time with each other, playing fun games and I was volunteering at one of the games. But I could see Teale alone, on a swing, going back and forth with just adults within sight. She had all these kids but she was more comfortable being on a swing by herself. Back then I knew I wanted her at the school she is at now, for just this reason, all the typical kids had grown above her and even surrounded by peers, she was alone. Suddenly my mind changes direction as a huge group of boys approaches the playground. They are older than Colby but look younger than Teale. They may think it is odd a fifteen year old is there with her Mom swinging. I watch as Colby observes them, but then he walks to Teale and sits on the swing next to her. I guess he feels safer with Teale than he does with strange boys, somehow the irony of this strikes me. Teale and Colby both suffer a lot of isolation, yet here they are, finding comfort in each other. The group of boys start a game that is similar to Marco Polo, just played on land instead of in a swimming pool. The game seems pretty difficult for the boy who is "it." He walks around with his eyes closed and the other boys are hiding up high on the playground equipment. Then it happens, one of the boys who is hiding calls the boy who is "it," a retard. My heart jumps, normally I would address this, normally I might try to make this a teachable moment, but I'm worn from the week I've had. Weeks off from school are tough for Teale and today has been edgy and she has been off. If I approach the boys, I know it may not go well. I know the tears sitting in my eyes behind my sunglasses may fall down my cheeks. Teale has a difficult time with emotions of others, especially mine or Mark's. If I cry, it actually upsets her and often causes anxiety and anger. She can not process sadness and wants you to stop being sad instantly. I sit there thinking about all the people I'm letting down by not speaking up. I'm part of a community that many are not. I love many people who have developmental delays. I know how amazing these people are and the gifts and the joy they bring to my life and the world. If our daughter Gwenn was here, I knew I would have to say something. I also know our son has been in similar situations and has been brave enough to educate. I feel like a fake, yet I sometimes need to give myself a break, because it is hard being Teale's Mom and this week I'm just drained. The boy says it again to his friend, I look for a reaction from Colby but am pretty sure he can't hear it. I know Teale can't and I'm sure she would not understand the word anyway. Just my heart breaks and I wonder if the boys parents know he uses the "R" word? I wonder if he has ever been educated on how hurtful that word is? I wonder if he cares. His friends don't correct him, even though I'm sure at least one of the boys knows who I am and who Teale is. We are in my neighborhood, just minutes from my home and honestly, most neighbors know us and they know Teale. I decide not to say anything, I feel guilty and I feel sad, but today I'm just not strong enough to confront a group of boys. So I'm addressing it here and hoping at least one parent, one person, will share with their loved ones that yesterday my heart broke just a little bit. Mostly because my developmentally delayed daughter did nothing to deserve the challenges that she lives with. And contrary to that old nursery rhyme, words do hurt. 

Friday, August 22, 2014

May Peace Fill Her Heart

At 4:30AM she turns on her light and goes back into her room. I lay there, hopeful she is just going back to sleep after getting a glass of milk and using the bathroom, but no, she walks back out. Her American Girl doll catalogue bag slung over her shoulder, she heads to the kitchen table. I know I am in trouble, yesterday was rough, her explosive behavior coming out in full force. This is easily a sign of what I suspected yesterday, a swimmers ear infection. Makes sense, she's awake early and swimmers ear especially hurts while laying down. I quickly go to the kitchen and tell her it is too early to be up. She growls at me and I say it again nicely, showing her the darkness outside. My head starts to spin, what if she won't go back to bed, what if she can't fall back asleep? Today is my fifth day in a row caring for Teale all day. Her school program ended last Friday and she doesn't go back until September 3rd. These weeks off from program can be tough, Teale likes the routine of school and she loves her friends there. Add in the fact that her favorite person in the world is at work all day (her Daddy) and she is stuck with me, well lets just say, the days are long. I added a challenge this week and am helping out a dear friend who has a son with behavior issues and special needs. She can't take him just anywhere for care and she needed to go to a work training this week, so I agreed to have him a couple days. Honestly, he is great and my other daughter Gwenn basically cares for him, but there is stress having another person in the house. Gwenn mostly respects the strange boundaries of Teale, staying out of sight is usually her M.O. Although there are times she seems to purposely push Teale's buttons, Gwenn gets that a Teale rage throws our whole day. Yesterday was debatable, Gwenn and my friend's son were in the kitchen when Teale started to turn. I often struggle with letting Gwenn live her life normally, which also involes helping Teale to understand and embrace their relationship or keeping the peace in the house at all cost. Just Gwenn's being in a room with Teale can set Teale off. Yesterday was no exception, Teale was sure Gwenn "was looking at her iPad." Gwenn was in the kitchen after waking up, looking for a drink and something to eat for breakfast. Teale was at the kitchen table watching YouTube videos on her iPad when she started in. She was immediately pounding the table and freaking out that "Gwenn was looking at her." Teale is diagnosed with many mental illnesses, but Intermittent Explossive Disorder was the first diagnosis. On a dime her mood goes from even to explosive, often without reason and in those moments there is NO REASONING with her. I try, I talk to her and try to get her to see Gwenn is only in the kitchen for breakfast, not to harm or upset her, but the morning had been edgy and I usually can tell when the rage is just going to have to play itself out. I start moving things that can break and be thrown at us, subtly but quickly I try to clear out her path and get Gwenn and my friend's son out of sight. The screaming increases, the pounding on the table is intense. She's angry her iPad isn't responding to her and that is being slammed. I take it from her, which than changes where her anger is. She doesn't always come after me the same now, on some unconscious level she may get that she is bigger and stronger than I am? Her anger has shifted though from Gwenn to me. I have her beloved iPad and she wants it back. I'm calm, years of training by circumstances have taught me to stay calm. The kitchen is one of my least favorite rooms (Funny statement, hu?)  for her to rage in though. I will try to get her to our safe place, the couch in the living room. On the couch she rocks herself, screams and often bites herself, but strangely, she will stay on the couch and not attack me, as much. Getting her from the kitchen to the couch is the challenge. She slams the hanging light and then knocks over our large picnic style table, I jump at the opportunity. Grabbing her left arm I put her in a walking hold and to her surprise I and able to get her to the couch. There she continues the rage, coming at my face a few times but I am standing and she is seated on the couch in front of me, so I have a better vantage point and deflect her attacks without too much pain. Like I said, many years of experience have gotten me here, but it never ceases to amaze me how sad I am while  observing a rage. A glance by her sister started this? A half hour of extreme anger because a person walked into the same room as you? She's biting herself to bleeding, blood is all over her arms and her mouth. Sometimes I try to stop that, but often my efforts to stop her biting just make it more intense. Today my head says to let it go. I try to use it as a teachable moment as I see the calm coming over her though. I still hold such hope that I can teach the inappropriateness of this behavior. I'm stubborn and I'm strong, my faith keeps me going and my prayers have been flying this whole time "please help my daughter to have peace in her heart" runs through my head over and over again. I'm sure God is with me, I'm sure I'm surrounded by angels who help me stay calm. I watch as her screaming loses intensity and I talk about how her behavior is inappropriate. She's waffling by now, exhaustion has probably kicked in and the adrenaline is fading. I video tape a small snippet, sending it to Mark and a few of my friends, some of which who are also Mom's of special needs children. Support is my M.O. in this life, my friends and especially Mark, are my lifeline. They get it and I need them. I need someone to see what Hell Teale is living in. There are tears wiped away as I watch my daughter suffer, sadness and a healthy bit of fear fill me. I still have over seven days alone to get through. So today, when she wanted to start the day at 4:30AM, my heart jumped with fear, but I won the battle and got her back to bed, pain killers and ear drops in, she went back to sleep... I just didn't. 

Saturday, August 9, 2014

Weight Struggles

I often wake with nothing in particular on my mind. Thoughts of the day ahead, what is on my plate, what do I need to accomplish and coffee go through my head. I stumble out of our bed and start my day with the scale. I've been trying to lose weight and get healthier for months now. It was February break and I realized I was abusing food far more than my usual. I was in a rut, using sugar for the quick high, but then crashing hard. This just created the vicious cycle of using sugar to get the fix again. The February school break and the Winter as a whole had been especially rough this past year. We had a very brutal Winter here in Upstate New York, it lasted long and it was especially cold and filled with much snow and many blizzards. I've never been much of a Winter lover and often gain weight, but this Winter I really packed on the pounds. My seasonal affective disorder or SAD, has been a problem for me my whole life. There were many changes in our life this past year though and I believe those changes made it worse. Our son moving out to a local college changed the dynamics of our home. I missed his company, I missed his sense of humor and how he supported me in times of struggles with Teale. Beau had become a confidant, a person who lived our life, so he got it and could understand when Teale was unstable and I needed help. With Mark working outside the home, Beau was the person I had counted on for years as a back up. If I couldn't get home on time for Gwenn or Teale's bus, if I was suddenly "in trouble" with Teale in a rage, if Mark and I just needed a few hours out at night with the girls in bed, sound asleep, Beau could often be counted on to help. His not being here meant I was on my own and besides the loss of a helper, I also just missed him. With Mark's Mom's death in December, we were all dealing with our grief differently. There were times there was relief that she was gone from the pain and suffering of her final years, as dementia had progressed and it was difficult to watch her deteriorate. But her warmth in those final years was stronger for me than it had been much of my life as her daughter in law, so I missed her too. It also brought back feelings of my own Mother's passing and the of that loss. It was official, Mark and I were both parentless and worse yet, our children no longer had a Grandparent. I felt sorry for myself, heck I have friends who still have Grandparents themselves. The changes may have exasperated my Winter blues? I wasn't particularly down or anything, but I was eating my way through the Winter. Then like an epiphany, I saw it, I HAD to change. I needed to feel better about myself and I needed to feel better! So the February school vacation was my breaking point. I set a goal for myself that on the Monday after break, when the girls went back to school, I was going to start walking on our treadmill. My goal was 15000 steps a day and my recently purchased FitBit was going to keep me honest. I started that Monday and for weeks I kept my promise to myself. As my husband Mark, practiced sax and his singing at night after putting Teale to bed, I walked, jogged and even ran on our treadmill while watching Netflix on our daughter's iPad. Mark would tell me how proud of me he was and I was encouraged by his support. Months would go by and I was diligent, it helped my mood and the Winter blahs seemed less, but my weight wasn't budging. I had cut back on sugar, I gave up diet drinks and drank more water, a huge step for me, I cut calories and I even tried Weight Watchers again. I tried to eat three meals a day, even though I have hated breakfast my entire life, I listened to much advice from Facebook friends and improved my eating and my nutrition. The weight stayed. I felt better and maybe I built muscle, maybe I toned some, but the weight wasn't budging. IT WAS SO FRUSTRATING! So now when I wake every morning and my first stop is my scale, I am pleasantly pleased with what it says. It took me a long time to finally hit a bigger wall than I had in February. After months of trying to lose the weight with reasonable exercise and diet, in June I decided to take a much more drastic step. I went on a very strict diet/detox and dropped about thirty pounds. I finally feel like myself again and have learned much from my experience. Weight should not define us, a number on a scale should not be a definition of my worth. I know this with my head, but the truth is, I personally feel better about myself when I'm at a reasonable weight. I can fit in clothes more easily, I feel more attractive for my husband and the sense of control and accomplishment lifts me.  It's funny, I have probably gained and lost my body weight by now in my lifetime. I'm a really good dieter, but not so good at maintenance of a healthy weight. I feel like this time is "it" for me though. I feel like this time I will and I can stay at a reasonable weight. I feel like this time I finally know what drives me and why I gain. Weight should not define a person and as a woman who has struggled with this, I hope it is not defining you... 

Friday, August 8, 2014

Jessica's (our niece) Words at our Renewal of Vows Ceremony

Well considering Ellie and Mark have both played a major role in my life, my entire life, I struggled with what I wanted to speak aout today. I hate public speaking and I was nervous I would get up here and pee the way I did the day I met my uncle Mark (but that’s a whole other story).
As a young child, some of the happiest memories I have are with Ellie and Mark and their daycare Babymacaroni. I did not have much stability but I always knew that when I was with them, I would be having fun. The toys, the art and crafts, the field trips, the friends, the love.
I distinctly remember the summer after I turned 11 years old. Ellie and/or Mark would drive into the city and pick my sister and I up every Sunday to stay with them for the week. We would go to babymacaroni daily to be Ellie and Mark’s “helpers”. As an adult, I now realize that WE were the ones being helped. Ellie and Mark were helping us escape from our real lives, even if it were just for the week.
That November, we ended up moving in with Ellie and Mark. All of our lives drastically changed that day. Ellie, Mark, Beau, Samantha, and myself. It was a day NONE of us will ever forget. Ellie and Mark were in their early 30’s and Beau was just 1 year old. Now I have to wonder, what kind of crazy people would move-in two adolescent girls into their home and turn their lives upside down?  They interrupted their own young happy family just to give us a better chance at life. I am very thankful for that.
I also have to wonder, what kind of man would allow his wife to take in her two nieces? And treat them as if they were his own flesh and blood? Only Mark Bradley. When Nana died in December, I couldn’t help but think about what an amazing job she did raising her children and how different my OWN life would be had she not raised my uncle Mark to be the awesome man he is today.
My uncle Mark and Aunt Ellie always have and always will be like parents to me. To this day, they both treat my daughter Amariah, as if she were their grandchild. I know she feels their love the way I did as a child. I appreciate ALL the love they have given myself and Amariah more than they will ever know.
Without Ellie and Mark, I would not know what it is like to have a family. Without Ellie and Mark, I would not know HOW to be a loving parent. Without Ellie and Mark, I would not know how to FIGHT for my child. Without Ellie and Mark, I would not have the values and morals I have today. Without Ellie and Mark, I would not know what a real marriage should look like. Without Ellie and Mark, I WOULD NOT be the person I am today (Although that may be debatable on whether that’s a good or a bad thing! (Just joking). If I have never said it before, THANK YOU for everything you have done for me. I know that none of this would have been possible, without your strong healthy marriage!

Reflections on our ROV

As I woke way too early this morning I realized I was still reeling in the love I felt on Saturday at our Renewal of Wedding Vows Ceremony. It would be impossible to put down my reflections on that day, but as I sit here, I so want to try. If only to capture a tiny bit of the joy I felt, so one day when the times are again tough (as life always goes in waves) I will have someplace to look back and remember the love. The other day I asked Mark which of our "Wedding Ceremonies" he enjoyed more? Mark who is very thoughtful, and rarely answers even a simple question quickly, immediately said, that would be tough to answer. I'm with him, the Wedding of our youth was fun, full of romance and mystery, obviously we had no clue the events and the love that would unfold. I know I was sure we would "make it" despite other people's doubts, but what I did not know were the challenges we would make it through. I didn't know getting pregnant would be tougher than my junior high teacher had made it out to be. I didn't know that when we had that baby boy later than my due date, he could end up in the NICU with tiny babies who struggled to hold on. I didn't know you could love a baby the way I loved him and worry so much about his future. I didn't know I would miscarry and Mark would spend months trying to put my broken heart back together. I didn't know about gastroschisis, strokes at birth, cerebral palsy and the many diagnosis, medications, specialists, therapies, schools and fights we would endure to get our daughter all she needed. I didn't know the week in the NICU with our son, Beau, would suddenly seem like a walk in the park compared to the two months in the NICU with our daughter, Teale. I didn't know I could survive on so little sleep, walking our home at night with a baby who was often tough to console. I didn't know our son Beau had the ability to grow up too fast and become independent at such a young age because he just had to. I didn't know how much I would miss "that perfect birth experience" and ask Mark to take the chance with me to have hope restored in my broken soul. I didn't know Mark had grown to love me so much he would not hesitate and soon our last child, our baby girl, Gwenn, would come into our life without even a squeal in the delivery room. But this time, that it would be ok and I would finally hold a baby in minutes, not in days, after birth. I didn't know that she too would grow up fast and soon be the big sister to her big sister. God had not prepared me, but somehow He did give me the strength to get through. Somehow, with this man by my side, who I would grow to adore far more than I could imagine, we would make it. Twenty five years later, we would come out of the storms and we would see the light. Our renewal was an affirmation of our love and our commitment. It was a celebration of those storms that we endured because our faith was strong enough to believe we could. The moments of our ceremony that stand out the strongest to me are times I could just feel the energy and the love. As we walked in as a couple with our three beautiful children, I took in the moment. I looked around the room filled with people who loved us and I truly soaked it in. The energy was overwhelming and I was lifted by that energy. It was a moment of pure love, unconditional love felt not only by the man holding my hand tightly, but the many people there to celebrate with us. That moment will always be the one I will remember the most. It surprised me how much I suddenly wholly believed that this ceremony, this family and this life, was exactly where I was always meant to be....

Thursday, August 7, 2014

Melanie's Words from our 25th ROV Ceremony

When Ellen asked me if I would write something or speak at her 25th anniversary – renewal of vows celebration – I thought – I would love to and I would be honored.  And then I thought… how am I going to put into words what Mark, Ellen and their whole family means to me.
Ellen and I actually met at a 5th grade roller skating birthday party.  Ellen had been injured earlier in the evening but still decided to go skating.  At one point she fell and I rolled right over her already injured arm.  The following year we had the same teacher and despite that disastrous meeting we became best of friends.    
She is like a sister to me – lucky you Mark – that makes you my brother in law.  We have had some wonderful times and we have been through a lot.  And even though we live miles apart – Mark and Ellen inspire me pretty much every day.  They share their lives with us  - their struggles and their successes.  And I pray for them and cheer for them. 
One thing that did come to mind when I thought of Mark and Ellen and their marriage is 1 Corinthians 13:4-8.  It talks about in verse 4 – Love is patient and kind, love does not envy or boast, it is not proud. Mark and Ellen are 2 of the kindest people I know.  They are both patient with each other and with situations that come up. 
Verse 7 says Love always protects, always trusts, always hopes, and always perseveres.  They have persevered together through thick and thin – fighting for Teale and also for Beau and Gwenn.  Just for normalcy and to the best that they can be.
And in verse 8 it says Love never Fails!!!!  They have raised 3 great kids – who just like them – are kind, compassionate, and loving. 
I just wanted to say Thank you for sharing your lives with me and with all of us here today.  Here’s to at least 25 more.

Wednesday, August 6, 2014

A Picture Worth a Thousand Words...

This picture is so special, I felt it deserved its own blog post. What it represents is weeks of hard work. I spent countless hours searching for clothes that fit each of my family members style and personality. Plus I wanted us to look good as a "five family," matching, but not so much that our own styles didn't show. We tricked Teale into thinking our preparation for a party was for her cousin, Karla. We also told Teale the party was on Sunday, (8/3/14) when in reality our renewal of vow's ceremony was at 4:30pm on 8/2/14. The celebration party to immediately follow the ceremony. Teale is an enigma to live with and we are often guessing at how to stay one step ahead of her. When Mark's Mom passed in December, Mark and I almost did not make it to her memorial service because of Teale. I learned from that experience, realizing that Teale's anxiety is most high on the day of a big event. She completely fell apart, raging, just minutes before we needed to leave for the church. It was overwhelming and incredibly frazzeling on a day all I wanted for my sweet Mark, was peace, so he could greive for his Mother. So when we started the preparation thoughts for this event, I suggested to Mark that we tell Teale the party was on Sunday, so she would not be so geared up. I also arranged Teale going directly from her favorite Saturday morning activity, grocery shopping with her Daddy, to an outing with her cousin Karla. Karla met Teale at Wegmans (our local, grocery store) and then Mark came home to help prepare for our event. We still had much to do and without Teale underfoot, we could accomplish it. She was ok with her cousin, still believing the party was the next day. IT ALL WORKED OUT PERFECTLY! Teale came home just in time for me to help get her dressed and for Karla to do her hair. There wasn't too much time for her anxiety to work itself way up and she was THRILLED when we surprised her with the whole truth! This picture is my PROOF! It show's months of hard work payed off and even some careful trickery for our Miss Enigma was the best thing we could have done! She EVEN let me put my arm around her, now that is PROGRESS! 

Photo cred to Karen Scibetta who took our original Wedding pics & our 25th Anniversary celebration ones too. 

Also a HUGE thank you to Karla, our niece, who helped so much to make our day work! 

Jill's Words from our 25th ROV Ceremony

Ellie and Mark came into my life eight years ago when my daughter Raffaella became friends with Teale at school.

It was obvious that they had a special relationship and devotion to their children.

My friendship with Ellie has been effortless. She is warm and generous with a good sense of humor. Some might say she is a bit sassy!

I have watched Ellie move mountains to get Teale the best care and education.

She has compassionately supported my family with the care of my father who struggles with Alzheimer’s.

Being friends with Ellie makes me want to be a better wife, Mother, and friend.

While Ellie’s personality is big and bold, Mark Bradley is a gentle giant. He always has a smile on his face and kind words to say. Together they make being married look pretty easy and fun.


Tuesday, August 5, 2014

Mona's Words from our 25th ROV Ceremony

I met Mark and Ellie 18 years ago when I was searching for a day care provider for my daughter, Lea. Their easy-going spirit sold me  - a husband/wife team and 10 happy children for Lea to grow up with? Perfect. Mark and Ellie cared for each of their charges as though they were their own. In fact, Mark was often asked when shopping at Wegmans if the five or six kids hanging on to his shopping cart were all his. As my daughter moved from baby to toddler, my friendship with Ellie grew stronger. I had many friends in my life but only a few as special as Ellie and even fewer with a husband as kind as Mark. Mark and Ellie were the whole package, so to speak.

Lea’s father and I divorced when she was two – it was a difficult time of change and adjustment and Mark and Ellie were very supportive of Lea and me. I left Lea at their home every Monday – Friday knowing that as long as she was with this very loving, family-focused couple, she would be okay. On the weekends, Mark and Ellie invited us to Dinner Dogs concerts, parades, church functions and music festivals. They never made me feel like a third wheel – Lea and Beau got along well and it was so nice to have a couple to spend time with. One Saturday night, Ellie and another day care mom took me out to a local nightclub now that I was single again. Ellie laughed with me the whole way home over the number of times the other mom said, “Oh my God, I could NEVER be single again.” Ellie truly understood what I needed during this time in my life. Mark and Ellie friendship gave me something unique – faith and lots of hope. They knew there was somebody out there and I would find him when it was the right time. It was obvious the love they shared with each other was something they wanted everyone to experience.  

As I began dating again, I promised myself to never settle for anybody who didn’t look at me the way that Mark looked at Ellie. Their marriage gave me a strong example of what a good marriage looks like. They enjoyed spending time together, they trusted each other, they supported each other in following individual passions, they communicated with each other in a caring manner and they laughed with each other often.

Mark and Ellie celebrated with me when I did, in fact, marry that perfect guy and we soon expanded our family with two more children. They cared for my son Mark – whom we called Markie Mark or Little Mark in those days – and celebrated with me when I told them I had decided to leave my job and stay home with the kids once my third, Ryan, was born. 

It’s hard to believe we have been friends for 18 years and they have been married for 25. How did time pass so quickly? Ellie and I have logged countless hours on the phone discussing day-to-day news….sometimes during very, very difficult times. During these times, when all seemed so overwhelming I knew without a doubt that everything would be okay – it had to be, God had given so much to this couple. Why would he not have easier times in store for them? I’m thrilled that the ups and downs associated with the early years of parenting have passed and Mark and Ellie are enjoying the true happiness and peace that is now theirs.

When I think about the role that Mark and Ellie’s relationship has played in my life, I marvel at how far we have all come. Through all of the kid’s birthday parties, the graduations and the times we have said good-bye for now to loved ones at memorial services, our two families have fit together like a team, being there for each other with love and support always. Ellie and I have joked about being at a three future weddings together as mothers of the bride and groom seeing that our three children are similar ages and opposite genders. These conversations make our children roll their eyes in protest. I think what Ellie and I are really commenting on when we talk that way is the knowledge that we will always be a part of each other’s lives. Mike, Lea, Mark Ryan and I will continue to celebrate their marriage milestones, their children’s accomplishments and all the day-to-day simple things that true friendship affords. As the years pass, I’m sure Ryan, the only one in our family who didn’t experience Baby Macaroni day care first hand, will continue to ask, “Is Beau really my cousin?” and “How are Mark and Ellie related to us?” To which I will always answer, “They just are, buddy…they just are.”

Monday, August 4, 2014

Sandy's Words at our 25th ROV Ceremony

I was asked to speak at my dear friends, Ellie and Mark, renewal of vows. If any of you know me well you know that I do NOT speak in front of groups. Well, I faced my demon yesterday and for the first time I willingly got up in front of a room full of people to honor this beautiful couple and this is what I had to say...

I've known Ellie since she was 8 years old but it wasn't until a random dinner at her sister, Anne's house did we meet on a more adult level. We connected immediately. We discovered that we were both looking for roommates so we got a place together and were roommates for the next 2 years. It was during this time when Ellie met Mark, they played softball on the same team. She was immediately enamored with Mark. He displayed many of the characteristics that she looked for in a partner...he was athletic, tall, cute and most importantly kind. Plus, it didn't hurt that he was a gifted musician that would sing to her everyday for the next 25 sweet is that?

The relationship progressed rapidly and in a few short months they had become engaged and married. Ellie had her day care business and Mark joined her in that. They worked together so perfectly. The children in their care were exposed to the love Mark and Ellie shared and that love spilled over into everything they did when caring for these children.

Prior to having a family Mark and Ellie traveled the world, made a home and continued to nurture their marriage which was always of the greatest importance. It would be 5 years before Beau would make his appearance. When Beau finally arrived they were so happy and content being parents, they loved this little boy with all their hearts and were 100% devoted to their small family.

Life did throw at them enormous challenges that would make most marriages crumble. The difficult birth and challenges that Teale has presented brought out the best in both of these remarkable people. They have loved each other with tender care through it all. The biggest beneficiary is Teale who is so blessed to have Mark and Ellie as parents. Then, the icing on the cake was when Gwen was born. This sweet, beautiful baby girl completed their family.

The constant theme throughout their whole marriage is how they purposefully cared and nurtured their marriage and family. They didn't just leave it to chance that their marriage would, dates, holidays and a relentless sense of humor have bonded and enriched these two beautiful souls. Individually, they are two remarkable people, together they are an inspiration and a force for good to all that know them.

Love is all things...

It would be tough to explain what happened yesterday. It was so violent, so sudden, so unexpected... I woke feeling awful, but the awful quickly turned to beyond words HORRIFIC. I was in a very intense migraine that took over every core of my body and made me sick to my stomach until I was empty and dry heaving. As if that wasn't enough, I couldn't get to an appropriate place and was sick in a sink that then was clogged. Embarrassed of my actions and hoping to fix my mistake before my family discovered it, I attempted to clean out and unclog the sink. My trying to fix it, only made me worse because my body was in such a revolt against itself. I struggle with no avail and then fall back into bed, crying and asking my sweet husband for help. This would only be the beginning of at least a 12 hour, drop dead, killer migraine. I haven't had one this bad in so long, I just could not cope. I had nothing very strong in the house to kill it and my mind was exploding with fear. If you have ever had a migraine, you will understand this hopeless feeling and how it can exasperate a migraine. Your fear actually seems to feed the migraine, increasing it's pain, like a monster under your bed grows suddenly in your mind if you imagine it to as a child. The more fear took me over, the stronger the migraine got. I had no medicine or a way to get any and that made me extremely vulnerable feeling. I don't want to get into the political debates around this subject, but the "new" healthcare program in our country is too expensive for my family. The rest of my family is covered under varies ways, but I am not and this was the first time I truly felt the weight of that reality. There is a shot that works for my migraines, but I had run out of them and the cost to buy them without prescription coverage is astronomical. My family struggles enough financially, so my having a costly purchase in the house that seems frivolous until when I need it, just seems very selfish. But what I would have given yesterday to have that Imitrex injection! It has worked on migraines that are sudden and violent like this, it has been the ONLY thing that has worked in migraines that are this sudden and violent. I start to imagine my needing to get to ER and the costs that will ensue if I have to do that. I would need an IV, ( and heavy painkillers) as the biggest reason I often can not overcome a migraine once I am this far gone is because I can not rehydrate myself. I vomit anything that goes into me with such violence that I'm too fearful to even try with Mark's begging me to. Often over the counter medicines work for me if I am fast enough to get them in. A combination of Excedrin Migraine and Motrin, plus coffee has been a Godsend in my life. I have also just learned how to control my migraines over the years, staying hydrated, avoiding certain foods and drinks, getting enough sleep, "letting things go," that I can not control, are just some of my coping methods. But migraines are fickle, weather can effect them, a food I have never had or have avoided for a long time and then suddenly my body revolts and turns on me without warning, can cause one. Just when I think I have it all figured out, one hits me like I have never learned a thing about how to control them. This one was possibly one of the top ten worst ones ever! It's coming a day after my renewal of vows ceremony and celebration seemed doubly cruel. The day before had been perfect, everything I had hoped for and more, but today my world crumbled. I had to rely on my husband to get me through and all I wanted was relief from the crippling pain. As I reeled in my pain, I asked him to ~ "Strangle me to death!" Ironic, considering he had just vowed the day before to love me in sickness and in health, but I just wanted relief, so until "death do us part" was what I asked for. Of course he did not strangle me, but he prayed for my relief and asked our friends, via Facebook to pray also. It was a long day, the pain eventually subsided with medicine we had in the house, a nasal Imitrex, coke syrup and another med to stop the vomiting. What I learned from yesterday was that I am loved, always, in the good and the bad, by Mark, who held me and the bucket as I got sick, by friends who helped Mark clean up our party mess in my absence, by my niece who again came to our rescue, by Facebook friends who prayed and wrote me sweet notes. Out of misery, I learned a valuable lesson, again. Love is deeper than the good times, love is deeper than the times that go the way you hope and expect. Love comes into our hearts with misery and pain, with happiness and joy. Love is all things...

Mark's 25th Renewal of Wedding Vows

I must admit that I had my occasional doubts back in 1989 about whether I was ready to commit to marriage. Prior to our wedding, I hadn’t been in church but a couple of times in the 1980’s, and it is probably fair to say that I didn’t have much business coming before God and vowing to love you, honor and cherish you. I knew very little of the trials and tribulations that were to come our way. 

However, God has a plan and it’s his own plan and quite often it is not the plan we might anticipate. And, by the grace of God, his plan for us was that we would be together, forever.  The early years of our marriage were simpler, yet much more uncertain in many ways. Over the last 25 years you and I have believed in each other, and in God, and that love and faith is at the cornerstone of everything we do. 

There have been moments in the last few weeks and months that I questioned why were renewing our vows and I have wondered what others think of our decision to do so.   After all, most people don’t do what we are doing now and as we learned in the scripture that Uncle Mark read, love is never boastful or arrogant. But, as our 25th wedding anniversary is upon us, I am happy and thankful that we are taking the opportunity to publicly renew our vows in the presence of our loved ones, our family and our friends whom we are blessed to have in our lives.  For we are doing so not for boastful or arrogant reasons, but out of love for each other, in celebration of our coming years together, and to renew our marriage covenant with God, each other, our family and our friends. 

As you know, and as most of you all know, my father died when I was a very young boy and so I was raised in a household void of the example of a loving marital relationship and, in a sense, without real knowledge of how to be, and what it takes, to be a husband and father.  And, of course, you lived in a single parent household for much of your childhood as well, and so we have lived, laughed, loved and grown together.   

And so, today, I, Mark, promise as I did 25 years ago, to love, honor and cherish you all the rest of my days, in good times and in bad, for richer for poorer, in sickness and in health, with the help of God.  Only today, I do so with a much clearer and more certain understanding of who you are, who I am, and who we are as a couple. I do so with a faith in God that helps us and sustains each of us separately, together as a union and as parents to Beau, Teale and Gwenn.  I love you.